Giant Cell Arteritis

Hi. Just read your comments. I am a fortysix yr old woman just diagnosised with Giant Cell. I can relate to everything you have said. Having a lot of trouble with illness and cure. Dont go off the steroids! You can lose your eye sight. My eyes are too tired now to stay but I will get back to you tomorrow,ok? I think we have a lot to talk about... Take care.

Hi Belita. How are you feeling today? If you dont mind me asking, how old are you? I am 47yrs and it seems quite young to have this illness. I was diagnosised in Nov07 and kinda thought that when I started treatmemt everything would be fine. I regret to say its not. I have been trying to get my meds down to 7.5mls but cant, with return of symptoms,at 35mls. The cure is almost as bad as illness. Except for the pain of course. Are you still having pain? As for the other side effects, I have decided to be possitive about them. The moon face,weight gain and tiredness are not nice but at least the pain is gone and everything returns to normal when we finish meds. From what i understand,that will be at least 2yrs.
I have another personal question please? Are you working or if at home,has this illness greatly effected your life? Made less of it? I have been struggling to stay as normal as I can but am losing the battle i think.
Please dont feel so bad about yourself. You have an illness, its not your fault. I think you should be kinder to tourself. You have been trying your best for nearly a yr. Well done!
Two things about me, I also have cataracts in both eyes and I just  taught myself how to use a computor. Late starter or what? I know believe any thing can be achieved. Hope you feel a bit better and you get a chance to drop me a line. Regards,cath278.

Cath 278

Hi Cath
I've been in allot of pain and just checked my eamail today. Thankyou for emailing. I had some really bad attacks this week. My head is so sore I sat and cried, my eye balls ache something awful . I seem to lose vision from taking the prednisone and my left eye runs. I'm at 60 mg now I tried to go down but I just got worse so the doctor told me to go up again. I've been on predisone for 11 months, 60 mg for 3 months and then 20 - 30 and none for a month.
I had an opportunity to go back to university to get my masters, I'm struggling but even if I can't work I will graduate. I have one more course to take after this term. I finished in less than threee with very good grades. I'm proud of myself. Its been 22 years since I was in university last.
Its good to talk to others with this illness. My faith is what keeps me going when I'm really afraid but I needed to reach out and hear from others that struggle with this illness. Its very lonely when you have a chronic illness or chronic pain. I also have Fribromyalgia, Pollymyalgia and Arthritis so pain is not new to me but I think that pain in the head and eyes is the worse and scarey.
Does your vision blurr from the predisone, or did it before the cateracts? Sometimes it feels like the prednisone will make you go blind instead of this condition.
My head and eyes are very sore right now so I will go. Take care.

Hi belita. Wrote you a lovely letter last night and then wiped it! I really do hope you are feeling a bit better today. The pain can be quite bad cant it? actually its not the headache that I cant deal with ,its the sore eyes. It makes every thing impossible. It was snowing here today and I was wearing sunglasses. I dont drive but even being a passenger at night time is hard. I wear sunglasses almost all the time now.
Im worried about you. You should have some relief at 60mgs. I hate to say this,but are you doing too much?( first let me preface that by saying Well Done to you about your Masters). Some of the hints i was going to give you were; Ddont let yourself get over tired, learn when you have gone far enought for you and take a break.I take two rests a day.15 mins-before I get tired. It really has helped me to cope and I get more done.
Do you know those eye pillows they use in yoga during thier meditaion? A friend gave me one and I put in the fridge an rest it on my eyes. It is very soothing.
I also protect my head from any breezes. In the car, the window down the smallest bit,hurt me.
Ive also started taking "Manuka honey,15 plus" to help my immune system. Its safe to take and I got fed up of picking up every infection.
I know Ive only had this problem 3mths but Im having such problems with the steroids to. They wear me out, make me high as akite one day,next bang down.Ive only told my husband and two friends whats going on so i would say everyone else thinks Ive lost the plot.
Im down to 25mgs but its not working. Pain is coming back. I will leave it for a few days to see if my body can adjust and then go up again.
I wish i could  better tell you about the blurred vision. I know that I have been back and forth to my ophthalmologist for the last eight mths but she never found the cataracts. Found out about them while in hospital in Nov. It seems they are growing fast. One ,on left side(trouble side) is progressing rather quickly, even since Nov. I dont think the steroids are causing the blurrieness but did you know that steroids GIVE you cataracts? May be that could be your problem. Have you had your eyes checked? Its a one in a million that I had them before treatment but seeing that you are on steroids since April it could be it.
Now ,before I go away, ive something to recommened to you. How about a massage or something you really like? I think you need a bit of spoiling! You are working so hard and trying so hard to deal with your illness, I think you must treat your self. Plan it for a weeks time, have something to look forward to. Small things can help with the big things!
  Like you ,I have to go now.Eyes are so tired but I really wanted to get back to you. Chin up. Uoy are not alone with this problem any more. cath278
PS. May I ask? how old are you? and are you religious?

Hi Cath
I just read your other message and replied and then I found this one. I'm am studying to be a Chaplin, I'm in the Master of Divinity program at the university. I'm 58. I'm almost finished except that I the last part of my degree involves working on the wards of a hopsital or prison, but because of how weak I feel I don't think I can. I'm accepted but I'm not feeling very well and may need to finish my degree in another way.
Thank you for the advice for the eyes and how not to get any bugs. My husband has an awful bug and I've taking Echinacea. This use to work before the prednisone. I had a very bad throat infection after Christmas for 3 wks I'm hoping I can keep this one away. My eyes were tested a few months agot. One of my lids has started to droop because of teh Prednisone. With this drug things happen rapidly so I guess I'll get my eyes checked again. Since I've increased to 60mg my vision is better but I'm very depressed and full of water. I look like a bull frog!!! The joy of Prednisone. Thanks for responding . Take care and have a nice weekend
Belita

Dear Belita:
Although I do not have this illness, I can't even imagine what you and those who have this are goiing through. I thank our Blessed Lord for the opportunity to share with you the comfort that our faith in Him brings us.
May God bring you healing and a touch of His hand upon you. Our God is an awesome God and He can do all things. You certainly have a wonderful and loving attitude and even though you are in such pain, you shared your love and concern to others. You'll never know how much comfort you brought to me when I was so devastated by my kitty's illness. Thank you again Belita. God Bless You.

Paintsflowers

Hello Paintsflower
I apollogize for not seeing this email until now. Thankyou so much for your kind words. I found it today on Easter Sunday when I'm feeling very sad about a family matter. I guess it was God's will that I not find your email until today when I needed it most.
I hope your feeling better about the loss of your kitty. Although we never forget them the ache gradually gets better.
Happy Easter
God Bless You
Belita

HI Belita, This is michelle. I just want to know how you are doing? Have you found out anything else? If you would like to talk im here.  

Hi Michelle
Its nice to hear from you. I'm not very well this week so I will keep this short. I'm in the middle of term papers but will have to get an extension. I'm studying to be a chaplain and almost finished. I'm sorry, I'm very dizzy, I need to stop.
Thanks. I send an email soon
Bev

My mother was diagnosed with Giant Cell in August 2008, she is 89.  She started on 60mg of predizone in August and is down to 25mg.  She does rather well, but the back pain has almost caused her to give up.  She is on Hydroco, Lyrica and a Flexeril.  None of these work effectively, and the side effects are awful.  Do you ladies have any suggestions?  She is also on Warfarin, plus some diabetes and blood pressure medicine.

I am so happy to find this site, as I have TA too.  I am 66 years old and was diagnosed a year ago.  I am still on prednisone and have tried unsuccessfully to lower past 10 mg.  When you have a flare, you have to go up on the dosage, and it is a long process to lower....very depressing to say the least.  I have most of the side effects, moonface, hump, swollen stomach, weeping/puffy eyes, insomnia.  Not a pretty picture.  I am now lowering the dosage again...10 mg. ond day and 7.5 mg the next day.  I have a good internist, but he wants me to see a rheumatologist too, so I see the new Dr. in a week.  It is depressing to have to stay on the prednisone....but, I know it is necessary.  Just don't look in the mirror too closely.  I could use some maternity pants...as I look like I am close to delivering something!!!!  I think one reason I have not experienced the mental problems associated with prednisone is that I have been on antidepressants for the last 15 years after the loss of our daughter.  I simply would not have made it without the strength that the Lord supplied, and the assurance that I will see her again.  So, I will go on and be thankful that what I have is not as bad as it could be.  I still have my sight and I have hope.  Please let me know if this site is still active as I need advice and want to be an encourager to others with TA.   /  Peggy

I have spent the last week staying with my 83yo mother who was diagnosed with ta at the end of June 09 and was started on 60mg of prednisone even before they did an arterial biospy  She was on a super high for the first 2-3 wks, lots of energy, no normal naps. Now the side effects have taken hold. Puffy face (which she's accepted). What she hasn't been able to accept is a sense of vertigo (dizziness) and some confusion. She was told that this would decrease when the dosage was decreased.  She was put on a tapering schedule that would take a year or more. She decreased to 40mg but blood tests indicated that everything was not okay so was put back to 60mg.  She's very depressed, doesn't want to be a burden to anyone.  she has had excellant health to this point and is very upset about all of this.  Any comments about your experiences,  hopefully positive, even if long term would be appreciated.  She has a great doctor, and specialists but it all seems to be overwhelming to her.   One day she is up in spirit and ready to carry on and the next she just wants to go into assisted living.....we have many family and friends to help.....any suggestions??  sueg

Hi - I was diagnosed with Polymyalgia Rheumatica in Feb 2007, (its 8th November 2009 now) and in May 2008 was diagnosed with Giant Cell Arteritis, put straight on to 60mg prednisone, and gradually reduced to the present 6mg p.d, but also now I have to take Methotrexate (after I was sent to a Rheumatologist because the Pred wasn't reducing the ESR and CRP readings. (I hope I've got those initials right).  I am 70 yrs old, have the moon face, have gained almost 20kg, and swollen legs and stomach.  My left eye is now filmy.  I did have the sense of vertigo, but thankfully it did leave.

I wish all of you fellow sufferers the very best, and hope we will all one day (soon) be free of this wretched disease and the awful symptoms associated with the meds.  
Petcat

Another thing - restless legs.  Does anyone else suffer from these?  My trouble started with the large doses of prednisone, and my restless legs nearly drive me crazy at night.  Is there a cure for this?